My son was diagnosed with ARFID at 18. But he likely had it since he was a toddler. His pediatrician dismissed it as just being picky and said to just keep putting healthy food in front of him because kids don’t starve themselves. Yeah, my kid was starving himself.
Definition of ARFID and its significance as a newer eating disorder
ARFID stands for Avoidant/Restrictive Food Intake Disorder. It is a newer eating disorder that was first recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. ARFID is characterized by a persistent avoidance or restriction of certain foods, which can lead to significant weight loss, malnutrition, or other health problems.
Unlike other eating disorders, such as anorexia and bulimia, the main focus of ARFID is not on body weight or shape, but rather on the avoidance or restriction of specific foods.
How ARFID differs from other eating disorders
ARFID is often overlooked or misdiagnosed as simple picky eating or a lack of appetite. However, the avoidance or restriction of certain foods in ARFID is not a choice, but rather a compulsion driven by anxiety, trauma, or other underlying psychological factors. This can make it difficult for those with ARFID to meet their nutritional needs and can have a significant impact on their overall health and well-being.
ARFID can also be a co-occurring disorder with other mental health concerns like anxiety or trauma, which can complicate treatment and recovery. It’s important to know that ARFID is not a minor or harmless disorder but a serious condition requiring prompt and appropriate treatment.
When my son transitioned from formula to milk, I started to notice problems. I was a picky eater as a kid and at first, I thought he was just following in my footsteps. But this seemed different somehow. He was also developing sensory issues and he was sick a lot! He was a late talker and some other developmental milestones were later than they should have been.
The day he was born I let them know he was severely tongue-tied. At the time, I didn’t know that this could cause oral motor dysfunction and changes the way he handles food in his mouth. They would not clip his tongue saying that they wait until there is a problem and then try and treat it with other more conservative ways first. Eventually, he did get it clipped but it seemed there was already dysfunction we could not correct.
At this point, we should have been evaluated by a speech-language pathologist who specializes in oral motor function and feeding issues. This was never suggested and at the time I didn’t know it even existed. Well, I know more now…
The 3 types of ARFID
There are three main types of ARFID, each characterized by different symptoms and causes:
Avoidant ARFID:
This type of ARFID is characterized by avoiding specific foods or food groups due to an intense fear of choking, gagging, or other negative consequences. Individuals with this type of ARFID may have a limited range of foods they feel safe eating and may avoid eating in front of others or in certain settings.
Restrictive ARFID:
This type of ARFID is characterized by a lack of interest in food or a disinterest in eating, rather than a fear or avoidance of certain foods. Individuals with this type of ARFID may have little to no appetite, and may not take an interest in trying new foods.
Aversive ARFID:
This type of ARFID is characterized by the avoidance of certain foods or food groups due to a negative sensory experience such as taste, smell, texture, or appearance. Some may have an intense dislike or disgust towards certain foods and may avoid them due to their sensory characteristics. It can be caused by previous negative experiences with food or a heightened sensitivity to certain sensory qualities of food. They will have a limited range of foods they feel comfortable eating. Some may only have a few “safe foods” they are willing to eat. Avoiding trying new foods or experimenting with different textures, tastes, or smells is common.
It’s important to note that ARFID can present differently from person to person, and an individual may experience symptoms from more than one type. The symptoms can also vary over time, so it’s possible for an individual to move from one type to another.
What are the symptoms of ARFID?
Symptoms of AFRID generally vary from person to person but can have the same clinical signs as a person with malnutrition. Many have abnormal eating behaviors.
- Difficulty eating in front of others, or in certain settings
- Disinterest in trying new foods
- Anemia or other abnormal lab values
- Difficulty maintaining a healthy weight
- Stunted growth
- Physical complaints, such as tummy aches or constipation
- Low heart rate
- Low blood pressure
- Abnormal EKG
- Difficulty with social activities and events that involve food
- Avoiding eating in public or in front of others
- A decrease in the amount of food intake
- Avoidance of certain textures, smells, or tastes of food
- Fear of choking or gagging
- Difficulty swallowing food and sometimes saliva
- Lack of appetite or interest in food
It’s important to note that not all individuals with ARFID will have all of these symptoms, and some individuals may have additional symptoms not listed here. Symptoms can vary in severity and change over time, so it’s important to have a comprehensive and individualized assessment and treatment plan for each person with ARFID.
Impact of ARFID
The physical consequences of ARFID can include the effects of malnutrition, weight loss or failure to thrive, and diseases associated with nutritional deficiencies. These physical consequences can have serious long-term health implications, including a weakened immune system, organ damage, and even death in severe cases.
The emotional consequences of ARFID can include anxiety, depression, social isolation, and poor self-esteem. Those with ARFID can experience significant impairment in their overall quality of life, as their food avoidance and restriction may impact their ability to participate in social activities, work or school, and relationships.
Treatment for ARFID
Treatment for ARFID typically involves a combination of therapy, nutritional counseling, and medical evaluation all with a team approach. If you are just starting out, you may have to put your own team together. When working with higher levels of care, the team is already part of the same facility.
Treatment really depends on the age of the child. Infants through about 8 years old should start with some type of feeding therapy with a specially trained occupational therapist or speech-language pathologist. There are a few programs out there that offer certifications in feeding therapy for OTs and SLPs such as the SOS Certification Program.
Some young children are too young for therapy-based treatment and need medical intervention to get fed. This can involve meds to stimulate the appetite or even a feeding tube placement. I have heard many moms say the feeding tube took the pressure off and life could move forward again. But again, each kid is different and has different needs.
If your child is older then other options may be more helpful.
ARFID Therapy
Cognitive Behavioral Therapy (CBT) and Family-Based Therapy (FBT) are the most commonly used forms of therapy for treating ARFID. CBT focuses on changing negative thought patterns and behaviors related to food. FBT involves the family in the treatment process and aims to improve communication and problem-solving skills. Both forms of therapy can help individuals with ARFID to identify and overcome the fears and anxieties that are associated with food.
ARFID Nutrition counseling
A specially trained ARFID dietitian is also an essential component of treatment for ARFID. A registered dietitian who has had extra training in eating disorders and ARFID can work with individuals to develop a personalized nutrition plan. They also understand techniques to successfully introduce new foods and decrease anxiety around food.
Medications may also be used in conjunction with therapy and counseling to help manage symptoms such as anxiety and depression and can also stimulate appetite.
A team approach is important in treating ARFID as it allows for a comprehensive and individualized assessment and treatment plan. This approach includes the collaboration of different healthcare professionals such as dietitians, physicians, and mental health professionals.
Early intervention is key in the treatment of ARFID. The earlier the disorder is identified and treated, the more likely it is that the individual will make a full recovery. With proper treatment, individuals with ARFID can learn to manage their fears and anxieties related to food and make progress toward a healthier and more fulfilling life.
It’s important to note that the treatment plan for ARFID may vary depending on the individual and their specific needs and that there is no one-size-fits-all treatment plan. It’s essential to have a comprehensive and individualized assessment and treatment plan for each person with ARFID.
Eating disorder levels of care:
There are several different levels of care for individuals with eating disorders that use a team approach, including:
Outpatient treatment:
This level of care is for individuals who are able to live at home and participate in treatment on a part-time basis. Outpatient treatment typically includes therapy sessions, counseling, and nutrition counseling.
Intensive Outpatient Program (IOP):
This type of program is usually 3-5 days a week for a few hours each day. Many of these programs are virtual right now and can be scheduled around other obligations.
Partial Hospitalization Program (PHP):
This level of care is for individuals who require more intensive treatment than outpatient care but do not need to be hospitalized. Partial hospitalization programs involve a full-day schedule of treatment 5-7 days a week, but individuals are able to return home at night.
Residential treatment:
This level of care is for individuals who require 24-hour supervision and support. Residential treatment programs provide a safe and structured environment for individuals to focus on their recovery.
Inpatient treatment:
This level of care is for individuals who require hospitalization due to a severe eating disorder or medical complications. Inpatient treatment includes around-the-clock medical monitoring and care, as well as therapy and counseling.
The appropriate level of care will depend on the individual’s specific needs and the severity of their eating disorder. It’s important to work with a healthcare professional to determine the best course of treatment, as well as to monitor the progress and adjust the treatment plan as needed.
My son was diagnosed with ARFID when he was 18 years old. And he has been at all levels of care at least once and some twice. Some teams were not a good fit. Other teams were great and he made so much progress. Unfortunately, there is no way to know ahead, of what was going to work better for us. At one point I did have to advocate for a change to a higher level of care which made a big difference at the time.
Do as much research as possible and find support from others who have been in the same situation.
Resources for ARFID:
There have been many helpful online resources that helped me find help for my son. Here are my top two resources:
The National Alliance for Eating Disorders provides outreach, education, early intervention, support, and advocacy for all eating disorders. They have an extensive database of providers and facilities cross-referenced for ARFID, location, and the insurance company.
They have an online “Friends and Family” support group that was extremely valuable to me. It helped me understand the importance of being proactive with getting treatment. The support group does focus mainly on other eating disorders but ARFID does come up often. They also helped me navigate the process of getting help at a higher level of care.
Eating Disorder Family Support Network – Mom2Mom (a Facebook group) – Not only did I find other moms on here (there is also a separate dads group called Man2Man) who could talk to me about ARFID, but I was able to post in a moment of crisis while we were at the ER. Literally within 30 seconds of posting, I got a message from a moderator with her phone number saying I could call her! She walked me through a very difficult moment and I am forever grateful.
And here are more resources for education and finding providers:
https://www.felixeconomakis.com – I don’t remember how I found Felix, but his treatment is unique. I have heard several inspiring testimonials about his methods. He has a TED talk on the website and a few treatment options. Unfortunately, my son is unwilling to participate in this treatment. But I’m still working on him to try it.
The National Eating Disorders Association (NEDA) provides information and resources on ARFID, including factsheets, webinars, and support groups.
The Eating Recovery Center has a dedicated page on ARFID, providing information on the causes, symptoms, and treatment options for the disorder. My son had relatively good success at residential treatment and PHP level of care with ERC. The virtual IOP was not a good fit for him though.
FEAST (Families Empowered and Supporting Treatment of Eating Disorders) offers a wealth of information, resources, and support for parents and caregivers of individuals with eating disorders, including ARFID.
The International Association of Eating Disorder Professionals (IAEDP) provides information on ARFID, as well as a directory of treatment providers who specialize in eating disorders.
The Academy for Eating Disorders (AED) is a professional organization dedicated to the advancement of knowledge and treatment of eating disorders, including ARFID. They have a webpage providing information and resources on ARFID.
It’s important to note that not all information available online may be accurate, reliable, or evidence-based, so it’s important to consult with a professional in the field or a reputable organization for accurate and up-to-date information.
The important thing here is to keep learning and keep talking to others who have been through this. Getting the correct support is so important. If your doctors are giving you the brush off, you may need to consider your options. You are not alone!
